{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,26]],"date-time":"2026-10-26T19:31:06Z","timestamp":1793043066785,"version":"4.5.0"},"reference-count":20,"publisher":"Oxford University Press (OUP)","issue":"6","license":[{"start":{"date-parts":[[2015,9,1]],"date-time":"2015-09-01T00:00:00Z","timestamp":1441065600000},"content-version":"tdm","delay-in-days":2100,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2009,12]]},"DOI":"10.1111\/j.1365-2133.2009.09347.x","type":"journal-article","created":{"date-parts":[[2009,6,11]],"date-time":"2009-06-11T05:51:56Z","timestamp":1244699516000},"page":"1323-1330","source":"Crossref","is-referenced-by-count":127,"title":["Quality of life evaluation in epidermolysis bullosa (EB) through the development of the QOLEB questionnaire: an EB-specific quality of life instrument"],"prefix":"10.1093","volume":"161","author":[{"given":"J.W.","family":"Frew","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L.K.","family":"Martin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"T.","family":"Nijsten","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"D.F.","family":"Murrell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","reference":[{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB1","doi-asserted-by":"crossref","first-page":"267","DOI":"10.1046\/j.1365-2133.2002.04607.x","article-title":"The clinical spectrum of dystrophic epidermolysis bullosa","volume":"146","author":"Horn","year":"2002","journal-title":"Br J Dermatol"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB2","doi-asserted-by":"crossref","first-page":"931","DOI":"10.1016\/j.jaad.2008.02.004","article-title":"The classification of inherited epidermolysis bullosa (EB): report of the Third International Consensus Meeting on Diagnosis and Classification of EB","volume":"58","author":"Fine","year":"2008","journal-title":"J Am Acad Dermatol"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB3","doi-asserted-by":"crossref","first-page":"508","DOI":"10.1016\/S0035-3787(06)75042-1","article-title":"Quality of life measurement: a fashion or a valid assessment?","volume":"162","author":"Auquier","year":"2006","journal-title":"Rev Neurol (Paris)"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB4","doi-asserted-by":"crossref","first-page":"707","DOI":"10.1046\/j.1365-2230.2002.01121.x","article-title":"Quality of life in epidermolysis bullosa","volume":"27","author":"Horn","year":"2002","journal-title":"Clin Exp Dermatol"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB5","doi-asserted-by":"crossref","first-page":"122","DOI":"10.1111\/j.1365-2230.2004.01428.x","article-title":"Assessment of mobility, activities and pain in different subtypes of epidermolysis bullosa","volume":"29","author":"Fine","year":"2004","journal-title":"Clin Exp Dermatol"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB6","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1111\/j.1365-2230.1994.tb01167.x","article-title":"Dermatology Life Quality Index (DLQI) \ufffd\ufffd\ufffd a simple practical measure for routine clinical use","volume":"19","author":"Finlay","year":"1994","journal-title":"Clin Exp Dermatol"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB7","doi-asserted-by":"crossref","first-page":"143","DOI":"10.2340\/00015555-0376","article-title":"Main problems experienced by children with epidermolysis bullosa: a qualitative study with semi-structured interviews","volume":"88","author":"Scheppingen","year":"2008","journal-title":"Acta Derm Venereol (Stockh)"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB8","volume-title":"Guide to Questionnaire Construction and Question Writing","author":"Woodward","year":"1991"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB9","first-page":"37","article-title":"Focus groups in health research","volume":"2","author":"Murphy","year":"1992","journal-title":"Health Promot J Austr"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB10","first-page":"18","volume-title":"Measuring Health: A Guide to Rating Scales and Questionnaires","author":"McDowell","year":"1996"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB11","doi-asserted-by":"crossref","first-page":"1201","DOI":"10.1016\/0895-4356(92)90161-F","article-title":"A comparative contrast of clinimetric and psychometric methods for constructing indexes and rating scales","volume":"45","author":"Wright","year":"1992","journal-title":"J Clin Epidemiol"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB12","doi-asserted-by":"crossref","first-page":"387","DOI":"10.1097\/01.dad.0000211510.44865.6d","article-title":"A comparative study of transmission electron microscopy vs immunofluorescence mapping for the diagnosis of epidermolysis bullosa","volume":"28","author":"Yiasemides","year":"2006","journal-title":"Am J Dermatopathol"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB13","first-page":"162","volume-title":"Handbook of Public Health Methods","author":"Quine","year":"1998"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB14","first-page":"156","volume-title":"Handbook of Public Health Methods","author":"Quine","year":"1998"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB15","doi-asserted-by":"crossref","first-page":"206","DOI":"10.1093\/rheumatology\/25.2.206","article-title":"Stanford Health Assessment Questionnaire modified to assess disability in British patients with rheumatoid arthritis","volume":"25","author":"Kirwan","year":"1986","journal-title":"Br J Rheumatol"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB16","doi-asserted-by":"crossref","first-page":"361","DOI":"10.1111\/j.1600-0447.1983.tb09716.x","article-title":"The Hospital Anxiety and Depression Scale","volume":"67","author":"Zigmond","year":"1983","journal-title":"Acta Psychiatr Scand"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB17","volume-title":"Measuring Quality of Life in Health","author":"O\ufffd\ufffd\ufffdConnor","year":"2004"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB18","doi-asserted-by":"crossref","first-page":"61","DOI":"10.1002\/ajmg.c.30035","article-title":"Progress in epidermolysis bullosa: genetic classification and clinical implications","volume":"131C","author":"Uitto","year":"2004","journal-title":"Am J Med Genet C Semin Med Genet"},{"key":"10.1111\/j.1365-2133.2009.09347.x-BIB19","doi-asserted-by":"crossref","first-page":"234","DOI":"10.1016\/j.jaad.2008.04.006","article-title":"A pilot quality of life instrument for pruritus","volume":"59","author":"Desai","year":"2008","journal-title":"J Am Acad Dermatol"},{"issue":"Suppl. 2","key":"10.1111\/j.1365-2133.2009.09347.x-BIB20","first-page":"AB81","article-title":"Development of the quality of life questionnaire for epidermolysis bullosa. Poster 1307, American Academy of Dermatology, San Antonio, Texas, 2008","volume":"58","author":"Frew","year":"2008","journal-title":"J Am Acad Dermatol"}],"container-title":["British Journal of Dermatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fj.1365-2133.2009.09347.x","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/onlinelibrary.wiley.com\/wol1\/doi\/10.1111\/j.1365-2133.2009.09347.x\/fullpdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,2,14]],"date-time":"2023-02-14T13:46:11Z","timestamp":1676382371000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/bjd\/article\/161\/6\/1323\/6642328"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2009,12]]},"references-count":20,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2009,12]]}},"URL":"https:\/\/doi.org\/10.1111\/j.1365-2133.2009.09347.x","relation":{},"ISSN":["0007-0963","1365-2133"],"issn-type":[{"value":"0007-0963","type":"print"},{"value":"1365-2133","type":"electronic"}],"subject":[],"published":{"date-parts":[[2009,12]]}}}